Wednesday, February 25, 2015

Kennedy Krieger, UVA, INOVA Loudoun, no more brace…WHAT?!

You would think I'm still on holiday vacation!  I have been terrible about posting so here it goes with a whole truck load of updates.

Our year started with a trip to Baltimore for an evaluation at Kennedy Krieger Institute (KKI).  I think I've mentioned we are unable to go back to UVA this summer so we are looking at other programs for Reagan.  We had a great visit and are currently waiting to hear whether KKI will have enough kids for a group session that Reagan can join over the summer.  We would live in Baltimore during the week and come home on weekends.  She would be in session 5 days per week for 6 hours per day.  If there are not enough children for a group session (three of similar age and ability) then they have offered a program starting May 26th which will be 5 days per week but 3 hours per day which requires us to pull Reagan out of school.  We are concerned about the impact of her missing the last 3 weeks of school and definitely prefer the summer option and are praying that works out for us.  I have a meeting setup with the Principal to discuss the impact on Reagan's transition to 1st grade next year if our only option is to have her participate the last three weeks of the school year.

Given we will be at KKI for Reagan, Cole will miss his usual OT session.  We requested an evaluation for Cole to determine what services may be available for him while we are there.  After the evaluation they said he would definitely benefit from services and recommended weekly OT sessions in addition to sessions at the Sensory Gym and a referral to the MD School for the Blind.  Once we have the dates set for Reagan's program we will be able to move forward coordinating these services.  We are hoping to have more information by April.  Until then, we wait.

The other exciting activity in January was Reagan and Cole's belt test for Tae Kwon Do. Neither had ever done a belt test before and didn't what to expect.  Both had a report card component of the test completed by Mom.  In addition, Reagan had to memorize 8 questions, 8 Tae Kwon Do terms and had to be able to count to 10 in Korean.  Given Cole is in the "cubs" class he didn't have anything to memorize. Needless to say, she studied for weeks and was very well prepared.  Both kids were given their yellow belts and were super excited to get their first trophies!  Master Lee is their main instructor, but they also have classes with the owner, Master Choi.

One big change for Reagan becoming a yellow belt is that the classes started to incorporate sparring.  Although very apprehensive at first, she has enjoyed being with her new friend Tory and is warming up to the idea of the pads and helmet.  Unfortunately she is still resisting putting on the arm and leg pads.  The Masters are being very understanding and aren't pushing it so we'll give it some time and hopefully she will realize over time that they will protect her if she gets hit!

In addition to the belt test in January, they also participated in a team competition in February.  They had a few preparation sessions where they talked about team work and the importance of working as a team.  Then for the competition they were divided into similar belt color groups and competed against each other in front of the Master.  Reagan was pretty excited she was able to compete with her friend Emma!

Reagan also had an appointment with her Physiatrist (Physical Medicine), Dr. Morozova in February.   When Reagan had her surgery in 2009 we didn't know if she would ever walk.  We were so excited when she started walking at 13/14 months that having an orthotic was a minor inconvenience.  Over the last 4 years she has had a new brace more than once a year and they got bigger and then started getting shorter.  And now we have BIG NEWS!  Dr. Morozova agreed that she doesn't see a difference in the way Reagan walks with and without the brace.  So we are taking a trial period without the brace to see if we notice any increased falls or change in her gait.  So far so good!  Most people have NO IDEA how hard it is to find shoes that fit with a brace.  So this is SUCH exciting news.  Not to mention, the last brace was $855 and it's one more appointment and one more factor in the equation when troubleshooting issues with blisters.

In January we also switched insurance companies which required us to leave Children's Therapy Center.  After more than 5 years there, we said good-bye with great apprehension.  But at $1200/month for therapy, we couldn't justify staying.  Both kids transitioned over to INOVA Loudoun Hospital in February.  Reagan is now seeing Jason for OT and Lillian for PT and Cole is seeing Kelly for OT.  Although we have only had a few sessions, so far we are very happy at the new facility and excited about having new goals and a new focus.  One great benefit we are seeing with OT is that the therapist is asking Reagan if there are things she does that are hard and is asking if she wants to work on those things in therapy.  There are a few moves in Tae Kwon Do that are very hard for her and she has asked to work on those.  We are very excited to see her taking an active role in trying to make progress and especially excited to see her start to make that progress and realize why therapy is so important.  Good things to come!!

As if that wasn't a busy enough start to the new year, we were also able to get a follow-up appointment with the Developmental Pediatrician in February.  As you may remember, our first appointment came after a 6 month wait and was a terrible experience because Cole was severely constipated and unable to complete the assessment.  This session he was in a great mood and the Nurse Practitioner, Sue Lansbury, was able to complete the Peabody Vocabulary Picture Test (PVVT) assessment.  And would you believe Cole was assessed to be at the cognitive level of a 5 year 6 month old?!  We were so excited to see him do so well on this test.  There were four pictures on each page and he had to point to the picture  that the tester asked him to.  Overall we had a great appointment and talked through our concerns.  We look forward to going back at the end of the summer to touch base before school starts in the Fall.  Sue will be a key element of support when it comes to explaining and advocating for the services and modifications Cole will need in the school setting.

As a follow up from the CHAMP study we completed in August at UVA, we had to go back for the 6 month evaluation.  As you may remember, she had a battery of activities she had to complete with both her left and right hands.  This assessment was done 1) before therapy, 2) right after therapy, 3) 6 months after therapy, and 4) 1 year after therapy.  The goal of the testing is to look at how much carry over is seen from the gains during therapy.  It was good to be back in Charlottesville even if it was only for 3 hours.  It was a long day of driving, but we stopped in to see Sue and Ruth and brought them cookies.  It was good to see everyone!

We had a crazy weather week last week with so much cold weather and snow that the kids were out of school almost all week.  We took advantage of the snow days and took a trip to Udvar Hazy Air and Space Museum one day.  The kids had a blast - their favorite part was the space simulator that played a movie in an enclosed cabin that felt like you were taking off into space to launch a satellite.  The trip was inspired by Cole's keen interest in space and planets.  His passion went into full swing when he saw the astronaut costume!

We also took advantage of the snow days and spent a day at the Baltimore Port Discovery Children's Museum.  It was a great opportunity to play but also have some educational components to our day.  It was a bit of a drive, but definitely worth it!  Although they loved the three floor climbing section in the middle, both kids found the golf ball tube pretty cool.

Unfortunately we also had a sick daddy one day so we decided to make him his favorite chocolate chip cookies!  We had three full days of focused time on hand strengthening and "lefty" use.  It's always nice when you can weave play into work and it's transparent to the kids!

We hope to have a very boring March with a possible mini vacation during Spring Break.  Then we will gear up for both neurosurgery and ophthalmology appointments in April.  Unfortunately we've had 5 separate days where Cole has experienced severe headaches.  And although they only lasted 30-60 minutes, we are nervous he is having intermittent shunt malfunctions.  Unfortunately it can't be diagnosed  unless we make it to the CT/Shunt Series machines WHILE he is having the episode…which is clearly impossible.  We are currently tracking the dates/times he has head aches and trying to rule out any other possible explanations such as constipation or dehydration.  We have been in contact with the neurosurgeon and will monitor the situation until our appointment.  Luckily Cole recovers quickly and goes about his day.

I have promised to share some of the kids' funny comments.  I have two to share in this post.  They are probably funnier if you know Cole well, but the way he thinks is absolutely astonishing to me!  He looked at me and held up his hand and gasped.  He said, "Oh NO!  WHAT happened?"  I said, "I don't' know honey.  What happened?"  He said, "that finger is littler than the other ones.  How come?"  I said, "Well that's your thumb, it's supposed to be shorter."  He said, "Well that is just ridiculous."

The next one is a little PG-13 so hopefully I won't offend anyone…but I found it hysterical.  Unfortunately Cole suffers from constipation.  It has been two weeks with no movement and a full cap of Mirilax the last 6 days in a row and still nothing. Unfortunately we had to use a suppository…which he HATES.  After many tears, cuddling and finally relaxing, he looked at me and said, "Hey mom.  When I grow big and you grow small I"m going to give YOU a suppository."  Man I love that kid!

Thursday, January 1, 2015

2014 Ends a Six Year Stretch!

What a great year!  We were very busy with 27 doctors appointments between Cole and Reagan plus 110 occupational/physical therapy appointments and 18 therapy appointments at UVA in August.  We are very excited to also have broken a six year stretch of hospitalizations.  Johnny's serious car accident/broken in 2008, Reagan's brain surgery in 2009, Danielle on bed rest, Cole and Kendall in 2010, Cole again twice in 2011 for not breathing, Reagan in 2012 with the return of seizures, and Cole again in 2013 with concerns of a shunt failure.

Even though we did end up in Urgent Care this year with several stitches on Cole's chin, we don't count that since it wasn't an overnight at a hotel.  We are considering this trend to be broken and look forward to another year of health in 2015!

The kids had a very fun Christmas.  All Reagan asked Santa for was a Leash Pup, Flutterbye and a Paw Patrol stuffed pup named Skye.  Cole asked Santa for "a Matchbox car…just one."  He was very excited about getting the Transformer Rescue Bots Chase and Heatwave and the flatbed/Jeep even though they weren't on the list.  The kids were also excited that their Dad took off two weeks from work!  It was so nice having him home!

After Christmas we surprised the kids with a trip to Hershey, Pa.  We took them to Sweet Lights which is a two mile drive through the woods to look at Christmas lights.  Then we headed to a Hershey Bears hockey game and back to the Hershey Lodge.  The kids were super excited about being at a hotel and we even made time for a quick swim at the pool.  The visit in the hotel lobby from a large stuffed Recesses Cup and chocolate chip cookies and milk on our pillow were icing on the cake!

On the second day of our vacation we took the kids to Hershey's Chocolate World to see how chocolate was made.  Reagan decided her favorite part of the entire trip was this ride through the story and especially the singing cows with hair bows explaining about the milk used in making chocolate.

After a visit to Chocolate World we spent the day at Hershey Park.  I had taken the kids twice over the summer and although they both had fun, Cole was apprehensive about some of the rides.  Well that hesitation was COMPLETELY gone.  He was so excited to run after Reagan onto every ride.  We spent the entire day at the park and they slept the whole way home!

Johnny was at the fire house for New Years Eve but the kids and I had a low key New Year's Eve at home with the Coullahan's and Golino's.  We did have a new record though - the kids stayed up until 11pm!  Perhaps next year we'll actually make it to see the live ball drop instead of the "staged" one.  But honestly, the kids are just as excited about the advanced show and don't really know the difference yet.

As we look into 2015 we are excited about all that may lie ahead and we are excited about seeing where our adventures take us.  We currently have 12 doctor appointments on the calendar, continued weekly OT for both kids and bi-weekly PT for Reagan in addition to a change in our medical insurance.   I'm sure this means numerous letters of medical necessity to the medical review board and proof of continued therapy requirements.  This year will also require a move from our beloved program at UVA's Children's Hospital to new program.  We hope to find another intensive summer therapy program that is a good fit.  Kennedy Krieger is our top pick but are still working through the details of how to make the schedule work. Secretly I am also hopeful that 2015 is the year we are able to discontinue Reagan's brace.  Time will tell, but we are hopeful this may be in our near future.

Thank you for continuing to follow our journey and we look forward to sharing our adventures next year!

Tuesday, November 18, 2014

From the Minds of Children….

I can't believe it's almost Thanksgiving!  Where does time go?!  We recently took Cole's 4 year and family pictures.  It has taken until just recently to have two children who cooperate for pictures and I can't tell you how exciting that is!  It makes pictures must more fun and a LOT less stressful.  Unfortunately I can't share ALL my favorite pictures yet because I don't want to spoil our Christmas card but here are a few!

I have two quick updates on doctors' appointments.  Reagan and I went back to see Shawn at Nascott Orthotics and Prosthetics and had him modify her brace according the physiatrists orders and physical therapist's suggestions.  The toe plate was cut down and the sides were trimmed down.  Not only does it not hurt to go on anymore, but Reagan can do it by herself!  WIN - WIN !  We definitely see this brace as a stepping stone toward not having a brace, but we are going to remain cautiously optimistic for now.

Cole was also able to FINALLY get in to see a Developmental Pediatrician.  After 4 phone calls and 6 months of waiting someone finally called back and offered an appointment two days later!  We saw Dr. Calbert from Children's National Medical Center and I really liked her approach.  She asked a LOT of questions and completed a few evaluations with Cole.  I think my favorite was when she asked what the picture of a lower case t was and he said, "That's a cross, it's where Jesus hangs."

Unfortunately after 2 weeks of constipation and Mirilax every other day for 10 days the medicine started working during the appointment and he was very uncomfortable and crying most for most of it.  Can't blame the poor kid!  We talked for a long time and I provided a family history.  Unfortunately she said he shows all the classic signs of ADHD.  She provided some recommendations for how to work with him and asked that we come back in 4-6 months.   Dr. Calbert's office books out 6 months and unfortunately there were no available appointments.  I was told they are working to clear her schedule since they hired a new doctor and recommended I call back next week.  Let's hope we can get back in to see her!

I find my feelings about this diagnosis very interesting….so much like my response to seizures before I had a child with them.  I would think, "they don't hurt you so what's the big deal?" Or glasses, "everyone has glasses, so what?"  But until you face the reality of how it changes your life you don't really look past the surface. So many kids are diagnosed with ADHD that it feels somewhat "normal," but as a mom, I realize this means he will face more struggles in learning than most kids…on top of the other challenges that he is already facing.  And although we will take this head on like everything else, it does kinda make me say, "Seriously? More? Enough is enough." So I will be doing some research and talking to people who know people and get as many recommendations as we can.  Luckily these waters have been charted by many before us so there will be guidance and understanding that we don't necessarily have with some of the other challenges.

Luckily we don't have another scheduled doctor's appointment until February!  Wow, it feels like a vacation!  So given I don't have THAT to write about, and given the kids have been cracking me up lately with their wit, I decided to start sharing some of the witty comments.  Here are a few to catch us up….

Cole recently asked if I would play "the me song".  I was slightly confused and he pointed to his penguin from Build-A-Bear that we got last Christmas that plays Frosty the Snowman.  He proceeded to sing, "Frosty the Snowman was a jolly happy soul.  With a corn cob pipe and a button nose and two eyes made out of ME!"

Cole was recently invited to a birthday party for a classmate.  A pregnant mom looked at him and said, "Well you are sure a big boy."  And Cole responded, "Not as big as you!"  Luckily he gave her a big smile of approval and she wasn't offended.

Cole and Reagan recently had Crazy Hair Day at school to raise awareness for childhood cancer.  He chose to wear one of Reagan's tutus on his head upside down.  When he got off the bus (4.5 hours later) he was wearing the tutu and I laughed and said, "Are you still wearing that?" To which he responded, "Are you still wearing THAT?"

Reagan begged to have an allowance and we told her she needed to earn money just like mommy and daddy have to do so now she has chores that she is expected to do at home. So we talked about options and she is required to make her bed, clean her room and clean the leaves that have dropped from the tree in the family room (starting light).  Last Friday she asked for her allowance and I told her she needed to clean up the leaves before I would give her the allowance.  She told me she didn't feel like it so I told her she wouldn't be getting her allowance.  The next day as we got ready to go to the store she asked for her allowance so she could buy something. I reminded her that she wouldn't be getting it since she didn't do all her chores.  When she said she would do it now I told her I had already cleaned up the leaves so it was too late.  She looked at me rather annoyed, went to get the broom and dust pan, walked over to the tree, shook it and proceeded to clean up the new leaves that fell.  After dumping the leaves in the trash and hanging up the broom she asked if she could have her allowance.  After feeling rather conflicted as to whether I should encourage this procrastination I decided her creativity in creating work and therefore creating money was rather ingenious and I gave it to her.  However, I think this will probably only work once :-)

More to come I'm sure!

Wednesday, October 22, 2014

Cole Turns Four and Reagan Rides in Show #2!

Wow, it has been a busy month.  Our little Ironman turned four on October 6th and we celebrated with his friends and cousins at the Dulles Sportsplex with a soccer party.  He had a great time with Coach Marie learning new soccer moves and playing on the moon bounce.  Cole's favorite toys this year were Optimus Prime (Transformers) and his new planet book from Grandma.  After just a week he has memorized all the planets in order from the sun!

We also went to my parent's to light a lantern for Kendall.  Each year the kids ask more questions about it.  And although they have a lot of fun lighting the lantern and watching it rise to our angel in Heaven, it's always hard to explain the raw emotions that we still feel in our hearts.  For the kids, it's a fun activity because they don't feel the pain and loss that we feel.  So for now we give them lots of hugs and thank God that they are both part of our lives here on Earth.

October was also filled with trips to Great Country Farms with Emma and Luke, Pumpkinville with Reagan's friend Carter and his brother Derek and Cox Farms for Johnny's work picnic.  The kids had a lot of fun on the slides, tractor rides and Reagan especially liked swinging from the rope swing!

Reagan also had her second horse show!  She rode in three classes: walk/halt, walk/trot, and an obstacle course.  She placed 4th, 3rd and 1st!  She was very excited and had a lot of fun especially since she rode in the same classes as her friend Sydney.  We were glad her pony Cupcake was a good boy!  We are convinced we sweetened the deal with the apples we brought him.